Judi Chamberlin, writings took on mental health care

In 1966 at age 21, Judi Chamberlin was locked in a New York
state mental ward against her will after the newlywed suffered a
miscarriage and couldn’t stop crying.

“A depression is something to get rid of and the goal of
psychiatry is to ’cure’ people of depression,’’ she wrote in a
1978 book that became a cornerstone of the “Mad Pride’’ movement
among mental health patients. “That my depression might be
telling me something about my own life was a possibility no one
considered, including me.’’

Ms. Chamberlin, who wrote “On Our Own: Patient-Controlled
Alternatives to the Mental Health System,’’ died Saturday at her
Arlington home from chronic obstructive pulmonary disorder, a
lung disease. She was 65.

Described as irreverent and fearless, Ms. Chamberlin’s writings
about the dehumanizing treatment inside mental hospitals helped
galvanize patients to become “psychiatric survivors’’ and
changed social attitudes about their future prospects.

“Her life, her book, her words, her talks were so
revolutionary,’’ said Dr. Daniel Fisher, executive director of
the National Empowerment Center in Lawrence, which Ms.
Chamberlin helped found.

“The mental health system, for a while, was scared of her
because she spoke so boldly with no compromise. She would say
things that now we accept there’s a certain truth to. But back
then, it seemed like heresy,’’ Fisher said.

Ms. Chamberlin, who was diagnosed as schizophrenic, contended
patients have the right to make choices about their care, and
she argued that their using those rights was integral to
recovery.

She liked the name “Mad Pride,’’ and her book became the
movement’s manifesto. “Instead of a pejorative word, they were
saying ‘No, we’re proud of who we are and so be it,’ ’’ said
Robert Whitaker, author of “Mad in America,’’ which chronicles
the history of America’s treatment of the mentally ill.

Ms. Chamberlin, who grew up in Brooklyn, first sought help at a
hospital but was quickly swept into a series of psychiatric
stays. She was committed to Rockland Hospital for two months.

“The experience totally demoralized me,’’ she wrote. “I had
never thought of myself as a particularly strong person, but
after hospitalization, I was convinced of my own worthlessness.
I had been told that I could not exist outside of an
institution.’’

In an essay called “Confession of a Noncompliant Patient,’’ she
said she learned to hide her true feelings of despair and anger
to win her freedom, while she fantasized about former patients
evacuating the hospital and burning it down. “In my fantasy, we
joined hands and danced around this bonfire of oppression,’’ she
said.

Her first marriage ended after her hospitalization. She
eventually found recovery in Vancouver at a crisis center run by
other mental illness sufferers who had won government funding
for alternative treatments.

She came to Boston and helped found the Mental Patients’
Liberation Front in the early 1970s. The group brought a
landmark lawsuit against Boston State Hospital. The 1975 case
established patients’ rights to refuse treatment.

In 1980, Ms. Chamberlin linked arms with other protesters and
blocked the doors at the American Psychiatric Association
Conference in San Francisco, said her friend Sally Zinman, who
stood with her that night.

Zinman, who lives in Berkeley, Calif., laughed as she remembered
how the doctors entered the conference through a side door.

“It’s hard to think of her as gone because her influence will
keep going. She has been so influential in social change that
she won’t die,’’ said Zinman, who spent 30 years as director of
the California Network of Mental Health Clients.

Ms. Chamberlin found little help for herself from psychiatric
drugs but did not oppose medication as a possible path for
recovery.

In 1985, she helped found the Ruby Rogers Advocacy & Drop-In
Center in Somerville, which is run by nonprofessional staff who
have had mental health issues.

She also worked on projects with the Center for Psychiatric
Rehabilitation at Boston University and was cochairwoman of the
World Network of Users and Survivors of Psychiatry from
2001-2004. In 2004, she was named to a panel advising the United
Nations on disabilities.

In the last year, Ms. Chamberlin battled for the rights of the
terminally ill to hospice care. She wanted to die at her home
surrounded by her books and her beloved cats, Gilbert and
Oliver, with frequent visits from her grandchildren. But
UnitedHealthcare cut off her hospice benefits at $5,000. She
appealed.

“Although I apparently haven’t died fast enough,’’ she wrote on
one form, “I do have a terminal illness and will need some
method of care.’’

By the time the company extended her benefits, Ms. Chamberlin
had found home care from Visiting Nurse and Community Health of
Arlington. She chronicled her days on her blogjudi-lifeasahospicepatient.blogspot.com.

Her partner, Martin Federman of Cambridge, who met her three
years ago, also cared for her. “When I first met her, she was
still in the peak of the work she was doing, and my first
impressions were of how incredibly focused and committed she
was,’’ he said.

On her blog, she wrote lovingly of Federman bringing her meals,
including her favorite dessert, Junior’s cheesecake from New
York City.

She did not want a memorial service. Instead, scores of people
lined up for a chance to praise her work at a celebration of her
life held at Boston University in August. Ms. Chamberlin, who
was in a wheelchair, took the microphone and issued a call for
the rights of hospice patients to care.

“Even at this last second of her life, she was fighting for
change, and it was an absolutely beautiful moment,’’ Whitaker
said.

Ms. Chamberlin leaves her daughter, Julie of Boston, and three
grandchildren. Burial will be private.